title: New approach to interstage care for palliated high-risk patients with congenital heart disease.
abstract: OBJECTIVE
  Home surveillance monitoring might identify patients at risk for interstage death after stage 1 palliation for hypoplastic left heart syndrome. We sought to identify the effect that a high-risk program might have on interstage mortality and identification of residual/recurrent lesions after neonatal palliative operations.
  
  
  METHODS
  Between January 2006 to January 2010, newborns after stage 1 palliation for hypoplastic left heart syndrome or shunt placement were invited to participate in our high-risk program. Patients enrolled in our high-risk program comprise the study group. Patients who had similar operations between January 2002 and December 2005 comprise the control group. Comparisons are made between the 2 groups with respect to interstage mortality and the frequency and timing of interstage admissions requiring medical, catheter, or surgical treatment.
  
  
  RESULTS
  Seventy-two patients met the criteria for our high-risk program. Fifty-nine (82%) of 72 patients were enrolled. Among 19 patients with hypoplastic left heart syndrome in our high-risk program, outpatient interstage mortality was zero. Outpatient interstage mortality for the 36 control subjects with hypoplastic left heart syndrome was 6%. Among 40 patients with shunts in the study group, there was 1 outpatient interstage death compared with 4 (6%) deaths in 68 subjects in the control group. Significant residual/recurrent lesions were identified with similar frequency between the 2 groups. However, after shunt operations, these lesions were detected and treated at significantly younger mean ages for patients followed in the high-risk program (P < .005).
  
  
  CONCLUSIONS
  Initiation of a high-risk program might decrease interstage mortality after high-risk neonatal palliative operations. Such an approach might contribute to earlier detection of significant residual/recurrent lesions amenable to therapy.
authors.affiliation: Congenital Heart Institute at Miami Children's Hospital and Arnold Palmer Children's Hospital, Miami, FL 33155, USA. nancy.dobrolet@mch.com
authors.forename: Nancy C
authors.initials: NC
authors.lastname: Dobrolet
authors.forename: Jo Ann
authors.initials: JA
authors.lastname: Nieves
authors.forename: Elizabeth M
authors.initials: EM
authors.lastname: Welch
authors.forename: Danyal
authors.initials: D
authors.lastname: Khan
authors.forename: Anthony F
authors.initials: AF
authors.lastname: Rossi
authors.forename: Redmond P
authors.initials: RP
authors.lastname: Burke
authors.forename: Evan M
authors.initials: EM
authors.lastname: Zahn
mesh_terms: D006348:Cardiac Surgical Procedures / Q000009:adverse effects / Q000401:mortality; D016022:Case-Control Studies; D016009:Chi-Square Distribution; D005260:Female; D005431:Florida; D007722:Health Knowledge, Attitudes, Practice; D018575:Home Care Services, Hospital-Based / Q000592:standards; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000401:mortality / Q000601:surgery*; D041943:Infant Formula; D007226:Infant Mortality; D007227:Infant Nutritional Physiological Phenomena; D007231:Infant, Newborn; D008297:Male; D016347:Medical Records Systems, Computerized; D009752:Nutritional Status; D010092:Oximetry; D010166:Palliative Care; D011183:Postoperative Complications / Q000175:diagnosis / Q000401:mortality / Q000628:therapy*; D015397:Program Evaluation; D058996:Quality Improvement; D012189:Retrospective Studies; D018570:Risk Assessment; D012307:Risk Factors; D013997:Time Factors; D016896:Treatment Outcome; D015430:Weight Gain